A Conversation With the Next Special Needs Caregiver
I just had an eye-opening conversation with the brother of an individual with autism and his father. The Dad is in not only going through the process of creating a special needs plan designed to care for his son with autism but also prepare his eldest son to take over as caregiver someday.
I wanted to provide this abbreviated exchange because it provides parents with a roadmap for when they can no longer be the main caregiver.
Ryan: What do you feel you need to know?
Answer: I am not sure. I feel like I don’t know anything, and I also don’t know what I don’t know. I am not even sure where I would start, and that worries me.
Ryan: If you had to tell your Dad what you need from him, what would you tell him?
Answer: I need a list of available resources, what my brother has and does not have. I need to know what my Dad wants for my brother. I need to have some direction in regards to my Dad’s desires for my brother’s future. I have always assumed my Dad is an expert on everything concerning my brother because he has been in charge of caring for him his entire life, but I am now learning that may not be the case.
Ryan: What would you need to feel more comfortable and reduce your worry level?
Answer: I need a resource. I need a guide who can help me. I need support. I need contact numbers and email addresses. I would also like a binder assembled that has everything I need to know, including government benefits being received, benefits that are available, explanation of special needs trust, a list of all assets and liabilities, insurance information, passwords, location of important documents, all the necessary legal documents, any tax information that would be applicable, my brother’s daily activities, the people that are involved in his life (and their contact information), my Dad’s wishes for my brother’s future, and of course someone I can call that can help me manage all this stuff.
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I know that this is just a snapshot of our conversation, but it gives a great picture of what the next generation expects from parents in their planning—direction, suggestions, expert support, and necessary information to carry on providing for their loved one.
These desires are not much different from what parents want in creating and carrying out their plan. Please review your plan and see if it matches to what this brother says he needs not to worry, or if you don’t have a plan…START.
This article was featured in Issue 92 – Developing Social Skills for Life